Carlena Lowell SEI 513 Case Study

Case Study Carlena Lowell SEI 513 Spring 2014

Carlena Lowell SEI 513 Case Study

*All names have been changed in order to maintain confidentiality. Child and Family Background Tim is a 33 month old boy who lives with his mother, Sarah; father, Will; and 7year-old sister, Emily. Tim was referred to Child Development Services in early April 2012 by the Maine Childrens Cancer Program due to concerns with his motor development and feeding. Sarahs pregnancy with Tim was complicated by a maternal appendectomy. Tim was delivered on time via a scheduled cesarean section. Tim received shots at his two month check-up. Within a couple of days, his legs swelled, he stopped eating, he had projectile vomiting, and he began to lose weight. As a result, Sarah and Will took him to the emergency room. He was admitted to the hospital and diagnosed with failure to thrive. At about four months of age, he developed nystagmus in one of his eyes, and was admitted to Maine Medical Center where a MRI was completed. The results of the MRI showed a tumor on his optic nerve; he was diagnosed with pilomyxoid astrocytoma (PMA). PMA is a type of pediatric cancer causing tumors to grow in the brain, particularly on the optic nerves, and on the spine. At the time of the CDS evaluation, Tim had eleven tumors on his brain and spine. He had undergone surgery 13 times, one of which included the placement of a shunt. When referred to CDS, Tim had already begun receiving weekly chemotherapy, and continues to receive it today. He takes several medications to counter nausea and acid reflux including Zofran, Ativan, Miralax as needed, and Ranitidine. He receives daily GCSF (granulocyte-colony stimulating factor) shots while in chemotherapy. Since his

Carlena Lowell SEI 513 Case Study

diagnosis he has had a gastrostomy-jejunostomy tube (G-J tube) for continuous feeding. Tim was recently diagnosed as blind from an ophthalmologist; shortly thereafter, the family began working with a Teacher of Blind and Visually Impaired Children (TVI), Mary, from Catholic Charities of Maine, as well as an Orientation and Mobility Instructor (OMI), Leah, from the Division for the Blind and Visually Impaired. Tim also continues to receive CDS Part C services, and was recently found eligible for Part B services. The familys primary service provider (PSP), a Physical Therapist (PT), has remained the same since the beginning of services. The plan also includes consultation visits from the Occupational Therapist (OTR/L) and the Speech Language Pathologist (SLP) on the team. The family finds support from both Sarahs and Wills parents and Sarahs sister incredibly helpful. Initial Child Status/Functioning CDS Evaluation Tim was evaluated by CDS in late April 2012. The Battelle Developmental Inventory-II was administered, and the multidisciplinary team consisted of a SLP and OTR/L. The following results reflect the original scores from this evaluation; however, the strengths and needs were obtained more recently through interview with the parents and the PSP. Adaptive. Tims developmental quotient for this area was 65, which is 2.33 standard deviations below the norm. The percentile rank was 1. Strengths. Tim will push his arms through openings in shirts once the shirt is
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over his head. He uses a G-J tube for continuous feeding. Needs. Tim has a G-J tube and is not currently eating or drinking. Social Emotional. Tims developmental quotient for this area was 95, which is .33 standard deviations below the norm. The percentile rank was 37. Strengths. Tim demonstrates curiosity at a novel toy. He displays definite preferences and enjoys physical play. He smiles in response to a verbal or physical cue and laughs when tickled. He is able to make his wants known, primarily through vocalizations and gestures. He is able to identify certain people by their voices; he seeks Sarah out by continually saying mama to identify where in the room she is. Needs. Tim does not currently interact with same aged peers. Communication. Tims developmental quotient for this area was 67, which is 2.20 standard deviations below the norm. The percentile rank was 1. Strengths. Tim localizes to sound and vocalizes recognition of familiar people. He responds to auditory games and vocalizes in response to music. He understands no. He signals adults to gain an object. He is able to make intentional requests to adults. He is able to say mama, dada, nana, yaya (Papa), and hi, as well as several other words. He also makes a sound for truck and waves bye. Needs. Tim does not yet give or show toys or imitate simple play with an object. He does not yet follow one step directions. He does not yet request food or drink, but because of the G-J tube he is not ever hungry. He does not yet name five familiar objects.

Carlena Lowell SEI 513 Case Study

Physical. Tims developmental quotient for this area was 79, which is 1.73 standard deviations below the norm. The percentile rank was 8. Strengths. Tim is now walking! He is able to navigate his environment with the use of a push toy, and is able to walk between a piece of furniture and a person for about five feet. He attempts to retrieve toys through physical touch. He is able to pull himself from seated to standing position. He is able to transfer objects from hand to hand. He will signal he wants to be picked up by putting his arms in the air. Needs. Tim does not yet hand toys back on request. He does not yet navigate stairs. Cognitive. Tims developmental quotient for this area was 58, which is 2.80 standard deviations below the norm. The percentile rank was less than one. Strengths. Tim preforms continuous action with toys and attempts to restart actions by movement. He shakes and bangs toys. He is beginning to navigate puzzle type toys, as well as dual (Braille-picture) books. He is able to push some buttons on toys to activate them. He is able to identify more than five body parts. Needs. Tim is not yet understand basic prepositional concept. Ophthalmologist Examination On October 4, 2013 Tim had an examination with an ophthalmologist. The report stated, On examination, the patient had no ability to fix and follow with either eye. Pupils were 4 mm and did not appear to be reactive on either side. Anterior segment examination was unremarkable. A fundus exam showed significantly pale

Carlena Lowell SEI 513 Case Study

optic nerves bilaterally. This patient has a history of a brain tumor that has left him blind. The optic nerves are significantly pale and atrophic. Initial Needs Assessment from the TVI The initial referral visit and needs assessment was completed by Mary in December 2013. The following are excerpts from Marys report: [Tim] has the benefit of a very supportive family, an older sister, and a dog (which provides surprise contacts and jostling as well as different tactile experiences). His parents report [Tim] touches many things but does not like cold things (like frosty windows) or the Christmas tree. He has various push toys which he uses to go all over the house (he is walking). When he gets stuck he says stuck, then moves around the obstacle. Wonderful! He reportedly likes toys, especially noisy ones. In observing [Tim] (who was a bit over-tired), it is obvious that he has some good receptive skills and emerging verbal skills. He said hi and his family members names appropriately. He was curious about the stranger (me) and came close to listen to my voice and recoiled a bit at the touch of my hand in his as an unfamiliar one. He then said hi in response to my greeting. [Tim] used his hands and feet (bare) to explore things in his path. At one point he got his trailing tube line wrapped around his ankles and neatly stepped out of the loop in order to continue cruising. When I asked if they had any questions yet for me, [Sarah] asked if [Tim] might be able to attend public school. I have every expectation that he will do so, certainly that is the usual nature of my jobto make it possible for him to be successfully educated in his home school.
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Maine, along with several other states throughout the country, has implemented a service determination rating scale for each child referred to ESBVIC. The scale helps to ascertain what type and how much service will be provided by the ESBVIC program. It is scored in points and ranges from 0-16 points with 0-1 point not requiring any service. [Tims] service determination rating is a total of 16 points. Orientation and Mobility Initial Assessment The initial assessment was completed by Leah in January 2014. The following are excerpts from Leahs report: [Tim] is a very affectionate two year old boy. He loves to be held and to know who is in the room with him. He cruises around rooms and explores his environment. He recently began to walk through open space unaided. He does so tentatively and is most motivated to do so when walking towards the voice of a family member. I observed him walking about five feet in a straight line through open space to his mother. He has a variety of push toys that he has been using to walk through open space. He prefers the heavier, sturdier ones. His family expressed interest in him having a device that would be less cumbersome for him to use so that he could negotiate out of corners with greater ease. On 2/20 I loaned them an adaptive mobility device called The Pusher. It is a simple rectangular device made from PVC pipe that can be used to feel the ground/floor and protect the user from colliding into obstacles. When I introduced the device to [Tim] he did not tolerate walking with it. His mother reports that she regularly exposes him to it with the hope that he will eventually want to use it as a mobility device. I will continue to work with them on using this and other

Carlena Lowell SEI 513 Case Study

mobility devices. On 3/14 I brought to his home a Melissa and Doug metal shopping cart. [Tim] immediately reached for the red handle and pushed it. This toy shopping cart is a sturdy mobility device with front wheels that move like a regular shopping so that it can be turned easily to get around obstacles. He can also use it to transport objects around the house. His mother reports that he knows his way around their house and knows how to locate familiar objects. However, [Tim] sometimes lacks motivation to get up and look for objects that are out of reach and not in a familiar location. For example, if a toy he is playing with rolls or is tossed out of reach he does not usually try to search for it. [Tim] can touch the following major body parts on his body on request: mouth, nose, ear, eye, head, leg, foot, knee, hair, and bottom. He also will perform some actions on request such as clap hands, jump, dance, and sit down. He can open, go through, and close doors on his own. He can climb on and off furniture at home. He can walk up and down steps holding onto someones hand. It is not clear to this instructor how much residual vision or light perception [Tim] may have. Recently it has been noted by his family that his pupils dilate in response to light and he has appeared to be bothered by bright sunshine. When I turned on a flashlight in a dark closet, [Tim] turned in the direction of the light. He also reached out to touch an illuminated object that was near him but not touching him. On other occasions I have observed him reach out and touch other objects that were not making any sound. His Nana says that it appears he makes eye contact with her when she holds him.

Carlena Lowell SEI 513 Case Study

Family Concerns, Priorities, Needs, and Resources The family is concerned about Tims ability to eat. At this point, Tims oral feeding is their number one priority to work toward. Tim currently wears his G-J tube 22-23 hours a day. Within the last six months, Tims doctor from the Maine Childrens Cancer Program suggested trying to wean down the amount of time Tim had his G-J tube in. The family tried this for a few months. Prior to beginning this, Tim was receiving less than 100 ml of food per hour. The plan was to increase the amount of food per hour, and decrease the amount of time he required the G-J tube. The ultimate goal was 150 ml per hour for 12 hours per night. About two months ago, the food intake was around 130 ml per hour for about 16 hours. Tim began getting nauseous at night, to the point of vomiting every night. Sarah and Will decided to decrease his food intake back down to around 115 ml per hour and increase the hours again. Once they did that, the nightly nausea subsided. This was discussed during a team meeting at the end of March. Sarah and Will planned to talk to Tims doctor the following Tuesday during his chemotherapy session. In addition, there is a plan in place for CDSs OTR/L to do a consultation visit to discuss oral feeding. When Tim does attempt to eat or drink orally, he experiences much difficulty with swallowing. In the past, Sarah and Will would give him a bite or sip of something, and then put his pacifier in his mouth for him to be able to swallow. There is also question of how much Tims chemotherapy drugs affect his sense of taste, and how motivated one is to eat if ones sense of taste is negatively skewed due to drugs. If

Carlena Lowell SEI 513 Case Study

the scope of Tims feeding issues is beyond our OTR/Ls expertise, we plan to make a referral to a feeding specialist in the area. At this point the family prefers to have services take place in the home, given Tims weakened immune system. This has fit nicely with the Part C approach to early intervention services, as is a home-based approach. The TVI and OMI also work in the home. We recently met for Tims transition from Part C to Part B conference. Prior to meeting, the Part B transition coordinator met with our site directors and determined that Tim was automatically eligible for Part B services under Multiple Disabilities, and did not need to have further evaluations done unless Sarah and Will wanted to. Also, they determined that for Tims first year of Part B, services could continue to take place in the home, given his medical fragility. At the meeting we did discuss Tims attendance of a Pre-K program once he turns four-years-old. Sarah and Will agreed that would be something they want to look into (this had been a question the TVI was asked about at their initial assessment). Sarah expressed concern with Tims severe attachment to her; he has never been away from her, and shows great anxiety when he is not near her. Sarah seemed a bit regretful of this, we reassured her she did what she needed to do in Tims first few years of life, which was be with him all the time. The family has a large support system that includes Wills mother and two siblings. Sarah works at a hair salon owned by Wills family; Tim goes to the salon with her on the days she works. Tim is covered by Maine Care. The family also receives a great deal of professional supports including, the Maine Childrens Cancer Program, Maine Medical Center, the ophthalmologist, the Division for the Blind and Visually

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Carlena Lowell SEI 513 Case Study

Impaired, Catholic Charities of Maine, and CDS. They have also found the community they live in to be of great support during difficult times in the past few years. Goals for Intervention Tim and his family are working toward outcomes and goals from CDS, the TVI, and the OMI. Over the years, Tim has met multiple CDS outcomes; the following are the current outcomes. In addition to these outcomes, all of Marys and Leahs goals were rewritten in Part C language and added to the IFSP. The CDS Outcomes 1. At mealtimes Tim will take food off the spoon with his mouth and swallow without needing the pacifier so that he can get off the feeding tube. 2. When offered a sippy cup Tim will take it and put it in his mouth so that he gets used to it and will eventually drink from it. 3. During playtime at the hair salon and when going outside at home, Tim will walk down at least two stairs with assistance from a caregivers hand and a railing or wall so that he can learn to navigate stairs (independently crawling up and down stairs is on the PTs Plan of Care). The TVIs Goal 1. Given dual picture books (Braille/Print with tactile illustrations), Tim will tactually interact with the illustrations and Braille dots while being read to by family members and service providers for at least 3 minutes during at least 10 reading sessions as observed by family members and service providers by June 2014.

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Carlena Lowell SEI 513 Case Study

2. Given dual books, Tim will turn at least one page successfully when asked to do so during at least 10 reading sessions as observed by family members and service providers by June 2014. 3. Given texture blocks/puzzles, Tim will match at least one block to its location with only verbal cues three times by June 2014, as observed by family members and service providers. 4. Given three familiar dual books, Tim will explore them and select a preferred book to be read to him in at least three trials by June 2014, as observed by family members and service providers. 5. Given two common objects to manipulate, Tim will select the named object in 3 of 5 trials by June 2014 as observed by family members and service providers. 6. When presented with a new or less familiar tactile experience (play dough, whipped cream, sand paper, mud, etc.), Tim will touch it with minimal prompting, at first with hand under hand support, and later without, on at least 5 occasions by June 2014 as observed by family members and service providers. 7. Given a familiar dual book, Tim will locate the named illustration (e.g. the balloon) correctly 5 times by June 2014 as observed by family members and service providers. The OMIs Goal 1. Tim will search for and find desired objects with minimal assistance in 3 out of 5 trials.

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Carlena Lowell SEI 513 Case Study

Intervention Process Tim and his family have been involved with CDS Part C services for 22 months. During that time, the PSP has employed the coaching model to their early intervention services. She has worked closely with the entire Part C team to provide the family with the possible support. Over the course of the familys time with CDS, they have received consultation visit services from the OTR/L, as well as the SLP on the team. The entire early intervention team also meets to discuss Tims progress every three months. The family has also received service coordination services through CDS the entire time. The Part C service coordinator was involved in referring the family to Catholic Charities of Maine last November. Once the referral was made and the TVI completed the initial assessment, she made a referral to the OMI from the Division for the Blind and Visually Impaired. Currently in addition to CDS services, the family receives in home support from both of these professionals. The TVI and OMI have both participated in joint visits with the CDS primary service provider, and plan to continue doing so on a fairly regular basis. This works well for all the providers involved as each is able to see how the other works with the Tim and his family, and may be able to use ideas in subsequent solo visits. We now meet as an entire team which includes Tims parents, CDS service coordinator and primary service provider, the OT and SLP if available, the TVI, the OMI, and now Part B service coordinator. Therefore, we can all hear progress from each member of the team, including the parents, and recommendations each might have. When using an approach such as this, the child and the family benefit to the greatest

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Carlena Lowell SEI 513 Case Study

extent possible. When everyone is working on the same things at the same time with different professional prospectives, much progress stands to be gained. Tim has met a variety of outcomes throughout the last 22 months with CDS. These include: Tim will play on his tummy. Tim will sit in his bumbo chair to be fed. While on the floor, Tim will move to his toys. Tim will spend less time with his binky. During playtime Tim will pull himself up to play with toys on the couch or table so that he can play with toys in different locations when he wants to. When Tim is laying on the floor and wants to sit up to play he will sit up on his own without hooking his feet under something so that he does not get frustrated and cry. Tim will nod or say yes when mom asks if he is hungry or he wants his binky so that people who dont know him well will know what he wants. When at work with mom, Tim will walk to get his toys so that someone does not have to carry him. During playtime with his sister, Tim will say a word for his sister so that he can get her attention. Tim will participate in playtime by making a choice of what he wants to play with when given a choice of two items so that he can use new toys and explore more toys.

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Sarah and Will will have a visit in place with Catholic Charities of Maine by January 9, 2014.

There were also several other outcomes that were not met or needed modifications due to Tims fluctuating bouts of sickness over the last 22 months. The outcomes listed above were met through the work of the early intervention team, specifically the PT, OT, and SLP. The average time it took for them to be met was approximately six months. Some took more trial and error of strategies, whereas some were met using only minimal strategies. Intervention has been had in the past regarding Tims oral feeding abilities. Methods that were developed are either no longer working or no longer applicable; for example, using a bottle and using a pacifier to aid in swallowing. As Tims eating is now on the top of the familys priority list, the PT plans to have a consultation visit with the OTR/L in the near future to assess Tims oral feeding abilities. As mentioned before, if his needs extend the scope of the OTR/Ls expertise, a referral will be made to an outside feeding expert to join the team. Recommendations for Addressing Continuing/Future Needs Recommendations for addressing continuing and future needs have been made by CDS, the TVI, the OMI, and Tims ophthalmologist. Undoubtedly, there are recommendations (and goals for intervention) made by Tims doctors at the Maine Childrens Cancer Program; however, CDS is not made privy to them except through parent report.

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CDS Recommendations Continue with Part C services at 48 visits over 6 months (1 hour visits twice per week from a PT, with 6, 60 minute consultation visits with the OTR/L and 3, 60 minute consultation visits from the SLP) until he turns three. Part B services will begin immediately in July when Tim turns three, as Extended School Year services were written into the plan. He will receive Speech Therapy, Occupational Therapy, Physical Therapy, and Specially Designed Instruction for one hour per week in the home. It is recommended a Pre-K classroom be looked into for when he turns four years old. Continue to work with the family around Tims oral feeding abilities; refer to an outside feeding specialist if need be. The TVIs Recommendations I am recommending 2 hours per month of service/consultation for [Tim]. This service time is contingent upon caseload assignment and could change due to emerging caseload considerations at which time the ESBVIC supervisor may redistribute TVI caseloads. I recommend that the services (direct and consultation) be provided for 1 hour 2x/month. (These services may be provided at moms work, at home, and sometimes in conjunction with other service providers such as the PT or O&M instructor.) I will refer [Tim] to the Orientation and Mobility Instructor from the Division for the Blind and Visually Impaired who serves this region (Leah) to determine any

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needs in that area and to provide related services if needed. (This was explained to the family.) I need to be invited to CDS service meetings (IEPs) and that my services and goals be included in [Tims] plan. (See proposed goals.) I expect that other team members will feel free to contact me regarding adaptations and accommodations appropriate for [Tim] due to his visual impairment. The OMIs Recommendations I am recommending at least 2 hours per month of service/consultation by an Orientation & Mobility Instructor. I should be invited to the IFSP/IEP meetings. Involve [Tim] in household chores. Participation in chores can help him with concept development, fine motor skills, gross motor skills, language skills, and orientation and mobility skills. The PATTER (Preschool Attainment Through Typical Everyday Routines) Guide Book from the American Printing House for the Blind is an excellent resource to help facilitate the use of task analysis to involve children with visual impairments in typical household routines. Continue to trial adaptive mobility devices that will enable [Tim] to explore his environment safely and confidently. Continue to increase his understanding of body parts and spatial concepts. If [Tim] shows signs of being bothered by bright sunshine he may benefit from the use of sunglasses when outside or riding in the car.

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The Ophthalmologists Recommendations I will see him again in one year.

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